Disability Issues twenty – or is it thirty? – years on

It is the time for politicians to come knocking on our doors. But what will you ask them if they knock?

Here are a few thoughts:

More guaranteed funding for those with significant disabilities.

More quality places.

Prioritisation.

Better & faster support for families.

Better support for frontline staff in terms of respect, pay and training.

Halt the over-bureaucratisation of disability services.

New employment & income support measures for “work ready” school leavers with disabilities.

No more baseless rhetoric, particularly in the change and rights area.

The season of politicians knocking on our doors is with us again. So – even if we don’t think they’re Santa Claus, what do we say to them about disability? Some things have changed for the better – people with disabilities are more visible and appear to have more rights, assistive technology is much better than it was. There’s more data. But many problems are intractably the same as twenty years ago when I was personally involved. Lists are in fashion at present, so here’s mine.

More guaranteed funding for those with significant disabilities. It’s not all about money – but a lot of it is. Apart from the obvious effect on places, a climate of shortage makes any family with any sort of service hold on to it for fear of being left with nothing. People don’t ask themselves what they really want, rather they go for what they can get. Similarly, services hold on to the status quo because they fear having to provide more with less. Personalised budgets are the buzz-word in policy documents but mechanisms for assigning them to agencies, let alone allowing them to move with the person, are rare.

More quality places. Not everyone agrees with this, but people with significant intellectual disabilities can’t flourish without input from both family and services. Getting a long-term suitable residential place for such a person in an emergency is still a struggle. Agencies say they cannot get immediate funding or sanction for extra staffing. Most of the people I know who have had to go into care are still in temporary arrangements up to two years later. This is unsatisfactory and worrying for both person and family. Emergencies are bound to occur. Why aren’t they planned for and funded?

Prioritisation. Why is there such a reluctance, distaste, inability to prioritise in the disability area? Some things are more important than others, some people’s circumstances are much worse than those of others. Some settings are much more dismal and “congregated” than others. It isn’t possible to do everything desirable next year, so an orderly queue is necessary. Prioritisation also applies to standards – protection for a person’s basic rights is non-negotiable, but other standards need to be brought in gradually.

Better & faster support for families. At least the respite grant is back, yet the possibility of respite is as uneven as it was 20 years ago. Families need greater support and respect. For many people with disabilities they are the vanguard of the famous “community” – the one that is there on a Saturday night when no-one else is. They need honesty and holidays and fewer long waiting lists!

Better support for frontline staff in terms of respect, pay and training. Whether staff are P.A.s, nurses, care assistants, psychologists, they, like families, are the ones who make the greatest difference. In my experience most are dedicated, going much further than the extra mile. Demonising staff because of the odd bad apple is unfair.

Halt the over-bureaucratisation of disability services. While a level of policy and procedures is essential in any human service, the major expansion of bureaucracy attributable to demands from the HSE and HIQA makes an “ordinary normal life” in a service more difficult to achieve. It also makes it more difficult to set up and run a new service. Some degree of risk is unavoidable, whether you live at home or in a service. Innovations can easily be stifled by bureaucratic obligations.

New employment & income support measures for “work ready” school leavers with disabilities. Existing measures haven’t succeeded in bringing young people with disabilities into mainstream work – more incentives for employers are needed to change things for the next generation.

No more baseless rhetoric, particularly in the change and rights area. Woolly words about “systemic change” create needless anxiety, false expectations and irritation in old-timers like myself- In my experience, change for the better has to be done one person at a time and change that messes up the transition stage seldom succeeds. Rights talk needs to be specific, recognising the constraints faced by everyone – disabled and non-disabled – in exercising their rights.

Less bright-siding, more Plan B strategies. Most people with disabilities seek services because they cannot manage without them. Some make the great leap forward and lead so-called normal independent lives; but not all of them do all the time. Some stay at what the experts see as the transition stage; some regress as they get older or develop further disability. Early re-assessment and increased support should be available promptly.

Mairide Woods is a writer, editor and social researcher. She is a lecturer at UCD Centre for Disability Studies, and is a former Board member at Frontline Ireland Magazine.